Grappling With the Emotional Effects of Challenging Medical Procedures
It was a normal Tuesday like any other. At least, that’s what I thought. The mundanity quickly vanished when my nasojejunal (NJ) tube unexpectedly clogged.
My specific feeding tube can clog easily. It’s the most narrow tube available, which makes me more prone to tube changes. While having a delicate tube as my only source of nutrition is risky, swapping out a clogged tube is even worse.
Typically, a wire is inserted through the old tube to act as a guide. From there, the old tube is carefully pulled out of my intestines and a new tube is threaded down the path of the wire. This is the safest method, as it prevents choking and aspiration. However, when the tube is clogged, a wire can’t go through it, and you’re forced to start from scratch.
I had to learn this the hard way. But learning that the process is detrimental to my emotional well-being was even harder.
After all, knowing I could develop aspiration pneumonia causes debilitating stress and anxiety. The heaviness of having yet another procedure is exhausting. The anger about not swapping out the tube sooner to avoid situations like these is inevitable. On that rainy Tuesday, I felt every emotion on the spectrum. But most of all, I felt defeated.
Living with SMA is tiring at times. I know that. But lately, it feels as though I can’t take my focus off my health even for a moment. That’s not tiring; that’s exhausting. So when I had to drop everything to rush to the hospital that day, I felt myself fall apart. To make matters (and my anxiety) worse, my usual doctor wouldn’t be there to perform the procedure.
However, to my surprise, my doctor saw my name pop up in the computer system and decided to stay late just for me. When I found out, tears filled my eyes, and what felt like a warm blanket of comfort enveloped me.
I can’t escape the challenges the procedure brings. But knowing I was in the best hands with someone who knows my anatomy and is well versed in nonvanilla spines like mine was half the battle. I’m grateful for doctors like this and their dedication to patients like me.
As I suspected, the procedure itself was horrible. Fortunately, I didn’t aspirate. (Yay!)
After I left, I realized that the emotional effects these procedures have on me are worse than the procedure itself. There are many conversations about what to expect physically from a procedure or surgery. But there aren’t many conversations around mental health and emotional well-being.
By sharing stories like mine, I hope we can change the stigma around this. After all, while my experiences are entirely my own, I know I’m not alone in feeling this way.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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